August 20, 2004 (Friday): red line under toenail; soak foot in Epsom salts; take masses of vit. C; because there wasn’t a protein source in the TBI food, I called Bienvenites and got food from them.

August 21, 2004 (Saturday): Eat cloudy eggs from Bienvenites; very well fried, though. (Bienvenites, in Santa Fe, New Mexico, USA, gets food that can no longer be sold in stores because it is spoiled or has reached its expiration date, and gives this food to those in need. Santa Fe has one of the highest per capita ownerships of Volvos in the world because of the number of wealthy Americans who have second homes here. 8/20/05)

August 23, 2004 (Monday): red line under toenail; soak foot in Epsom salts; take masses of vit. C

August 24, 2004 (Tuesday): red line under toenail; soak foot in Epsom salts; take masses of vit. C

August 25, 2004 (Wednesday): red line under toenail; soak foot in Epsom salts; take masses of vit. C; line seems fainter

September 30, 2004 (Thursday): Corrine brings box of food, I get a painful muscle contraction while carrying box in; I can’t move; Corrine has to come and take box; I’m trembling/perspiring, maybe from shock of pain. Was contraction from how cold my house is, and how cold I am, or maybe the eggs.

October 1, 2004 (Friday): mid-section muscles very tight; exercise on Gazelle makes it worse; call Alice Sisneros… she says not to come in, to go to E.R. which has to see people who don’t have money; B12 shot to help me not be depressed. I drive to E.R. The fact I don’t have a fever, swelling or obvious infection in my toe, seems to make them think I’m not sick; they see everyone who comes in after me, but not me. So I leave because sitting there is making me feel worse, but maybe they are right and I’m not sick.

October 3, 2004 (Sunday): can no longer lay down to sleep: muscles too tight; when I do lay down, I get a muscle contraction when I try to sit back up again. Nauseous. B12 shot. Ledum 30 every 3 hr.

October 4, 2004 (Monday): Nauseous; mid-section muscles tight. Ledum every 3 hr. B12 shot. 8:30 a.m. leave for Dr.’s. Patty at Whole Life Clinic orders tetanus test “STAT” at TriCore. 2:00 p.m. TriCore says test takes ten days. Muscles by diaphragm are tight. 3:00 go to ER. Same as last time: no swelling, no fever. Muscles not just tight, but cramping. Sit, hugging my waist to control cramping.7:00 p.m. cramping stops; feel much better. Leave E.R. go to Wal*Mart for aspirin in case nausea was from heart having a hard time, and get saltines because they are light… things have been too heavy, physically heavy, for me.

October 5, 2005 (Tuesday): no longer nauseous after taking aspirin. Muscles not cramping, still tight, but not as much. Tell Corrine not to come over because I’m so much better. Go to sheriff’s re Returns on summonses: get muscle twinges and sit down; go to Wal*Mart for air mattress in case cramps are from uneven surface I’ve been sleeping on; also get battery for my cordless phone so I can have it in bed in case I can’t get up during the night and have to call ambulance; begin to get major tightness and pain at Wal*Mart; pain at home like appendicitis attack; can barely put air in mattress, fight pain to put sheets and covers on bed. Go to bed; must sit, cannot lie down. Too sick to give myself B12 shot.

October 7, 2004 (Thursday): Up early, manage to shower, write letter and check to Whole Life Clinic, go there thinking that if I’m there they will have to see me. Dr. Young calls me in, says to lie on examination table. I say I haven’t lain flat in many days, but do as she says. When she presses on my midsection muscles, they are painful. Then my back muscles on the right side begin extremely painful contractions. Each time one hits I scream. Whole Life Clinic calls ambulance. Many contractions. Ambulance takes me to E.R. with IV in hand. Muscle relaxant or pain killer put into IV. I ask how long before it will work. I watch clock. Doctor interviews me. I explain about brain damage because pain is making it hard to think. I am afraid I have tetanus. Doctor says I can’t have tetanus because it is rare. Nurse says I can’t have it because it comes from the soil. Doctor insists on psych evaluation before any medical help (besides pain killer) is given. It takes a long time for them to draw blood. Techs say that flow stops. Third person succeeds. I am very thirsty and ask for something to drink. Told I can’t have anything unless doctor agrees. I don’t get anything to drink. When blood work comes back, it’s fine. I’m given tetanus shot and two 250 mg Erythromycin tablets plus some loose, and script for 5 days of 250 mg Erythromycin. Ask nurse to write down when I should take it and Ibuprofen. I had told nurse and Dr. Bardwell that I didn’t want stronger drug (than Ibuprofen for the pain) because I was afraid that with my impaired balance I might fall. Nurse wrote that I should take one Erythromycin four times a day, and Ibuprofen three times a day; taxi coupon to get back to car. Sara calls p.m. about delivering summonses next day.

October 8, 2004 (Friday): don’t want to go out, but summonses SO important. 11:30 a.m. meet Sara at Dunkin Donuts parking lot; she delivers 4 but then I start fading fast. I ask if we can go to Walgreen’s for saltines, melatonin and so I can get B12 needles. By the time I get the needles, the pain is intense and my muscles are so tight that I’m bent over; hard to move from Sara’s car to mine. Pray while I’m driving home that I make it. Go to bed. B12 shot through enormous effort.

October 12, 2004 (Tuesday): Not enough Erythromycin left… call Wal*Mart to see if they filled it right. They say doctor wrote that Iwas supposed to take three a day… (I’ve been taking 4) Sara goes to Wal*Mart for me, for more Ibuprofen and Saltines. I have a hard time standing up to answer door. Walking is hard and slow. Corrine comes over; helps me by moving printer onto bedside table, scanner onto bed, surge protector from living room to here, and by switching cord away from where I could trip on it. Corrine arranges Home Instead: 3hr a wk. I call Whole Life for more Erythromycin. Maricel comes over from Home Instead to arrange caregiver. Call Wal*Mart to see if they got script. Script is for Zithromax: $46. Call Whole Life and ask for something cheaper. Told to buy it or not. B12 shot.

October 13, 2004 (Wednesday): Kathleen comes from Home Instead. I call Whole Life for cheaper script. Ask Corrine to call them. Kathleen looks at my bank account, calls Whole Life to say I don’t have money for Zithromax at $46. New script is called in, but it’s for penicillin related drug, and I’m allergic to penicillin. Kitchen Angels sends food. Great, healthy food: chicken, salad, soup.

October 14, 2004 (Thursday): Feel better a.m. Up fifteen seconds longer before stomach muscles grow worryingly tight, as if they might set off bad contractions. Erythromycin ran out yesterday. By p.m. I no longer feel better. B12 shot.

October 15, 2004 (Friday): Call Whole Life: script is for amoxycillin and I’m allergic to penicillin. Dr. Young says the script is cheaper. I say whether it’s cheaper or not, I’m allergic to penicillin. I ask for Metronidazole which tetanus sites suggest for people allergic to penicillin; no one to get it for me. By the time Kitchen Angels brings food I could barely get to door, when I take food bag, it’s too heavy for me and it falls to floor, he takes it to kitchen for me and asks, “Is there anything else you need?” I said yes, prescription at Wal*Mart. I was too sick to explain that new script was $4 and I had the money. Walking from door to bed, I was in major pain, way bent over from tightness and cramping.

October 16, 2004 (Saturday): Major cramping of midsection muscles – much worse, except Ibuprofen keeps bad contractions from happening. Call Mormons to get antibiotic prescription for me. Fight pain to put money on door. Missionaries get script. Can barely stand up to go answer door and get script from Mormons. Prescription is for two 250mg Metronidazole a day. Site said 500 mg, 4 times a day. Right thigh hurts… B12 shot, hope it helps.

October 17, 2004 (Sunday): very sick with tight muscles, cramping.Hope it gets better. Right thigh hurts a lot, but not in the sunburn way.

October 18, 2004 (Monday): very sick with tight muscles,cramping; standing up a few seconds while Kathleen changes sheet puts major strain on muscles; cramping sensation very scary. Right thigh hurts: 25 or more stabbing pains all at once. B12 shot.

October 19, 2004 (Tuesday): tight muscles, hard to stand; an inch of water in Brita pitcher makes it so heavy for me that side muscles twinge as if the extremely painful contractions will start in my back. Diane from Kitchen Angels comes over; she’s nice, but answering her and explaining, my muscles get much tighter, even up to diaphragm ones. I tell her that ER Doctor said I couldn’t have tetanus.

Sara comes at 1:30, she wants me to do everything. She says she won’t finish summons returns. My muscles so much tighter that they hurt. I take Ibuprofen 1 hr. early; neck stiff, eyes burn. B12 shot.

October 20, 2004 (Wednesday): tight muscles, hard to stand up, Brita pitcher still feels very heavy with inch of water in it. Kitty sitting on lap, washing herself, bumps my tummy muscles three times and my back muscles started rippling like they did before the extremely painful contractions when the ambulance took me to the E.R.

October 21, 2004 (Thursday): tight muscles, painful to stand. Thinking about how bad I got while Diane from Kitchen Angels was here. Even though she was really nice — the stress made my muscles worse. Sara, later, made tightness of muscles so much worse I took Ibuprofen an hour early. But throat got sore, eyes burned, and Ibuprofen didn’t help. Soooo, I try to be as relaxed as possible to see if that helps muscles. B12 shot.

Muscles still so tight: can’t stand up straight, have to sleep sitting up… Sooo, I concentrate on relaxing muscles. It worries me that I’m not back to being as good as I was before I was without the antibiotic for some days… I’m still much worse than I was last week on Thursday. Right thigh is so piercingly painful.

October 23, 2004 (Saturday): Right thigh feels as if so many knives are stabbing it. Stomach muscles very uncomfortably tight, neck stiff, couldn’t bend to give kitty Fancy Feast treat; put it on unused table, but kitty didn’t find it; made me sad. But I’m not as bad as I was a week ago yesterday; still, I can’t be up 5 min. without feeling the cramping is bringing the painful muscle contractions … B12 shot.

October 24, 2004 (Sunday): Woken repeatedly by pain in right thigh. But when I get up, it’s the longest I’m able to be up before the cramping sends me back to bed, since over a week ago… I made a cup of coffee from start to finish. But, it took half an hour for my muscles to feel good enough for me to let the kitty out. She’s been major patient. She used to meow several times each day for a treat. Now she hasn’t meowed for a treat in weeks. She watches me when it takes me so long to stand up, and to walk. It’s like she can actually see a difference from before. The first time I get up each day, I’m the best. After that it takes an hour to regain enough strength to do about half as much… and it goes down hill all day… Lots of my hair is falling out again, too. B12 shot.

October 25, 2004 (Monday): Up at 5 to take antibiotic. Right thighis not as painful as yesterday. (I am reminded that the right side of my body is where Dr. Baten found the slowing when he tested my nerves… so maybe the nerves there are not so well to begin with, and that’s why the contractions happened on my right side…) 6 a.m. make cup of coffee and let kitty out, so I am better today than yesterday when I couldn’t do both things. Kathleen a major help, gets food, vitamin C, crock pot, stamps, ink, envelopes and mails Motion for Enlargement of Time in all pending cases. She brings mail in. ER records are worryingly inaccurate about salient things. Call hospital about how to complain about this… talk to Mary Casious. Patty at Whole Life says Dr. Young thought I had appendicitis… I say I had my appendix out as child. She says maybe hyperbaric chamber will help. I find this suggestion VERY WORRYING. (If just touching my stomach made me have the extremely painful back muscle seizures on October 7, then what would happen if the air pressure changed all around me? I thought the pressure would cause more extremely painful muscle contractions. 8/20/05)

October 26, 2004 (Tuesday): pain in right thigh wakes me at 6 a.m., makes me cry out it’s so sharp and intense (this is the thigh that used to feel badly sunburned alternating with numb — on the side that Dr. Baten’s tests showed had slowing of nerve impluses). Have only one Metronidazol left: take it at 7 a.m. Make coffee and let kitty out. I feel less sick, besides being a little stronger and it taking a little longer for the cramping to start. Try to get right up and make second cup of coffee, but that’s too much and I have to go back to bed without finishing. Sleep a lot of the day; hopeful that Whole Life Clinic will call in a Metronidazol prescription. Take Ledum at 9 p.m. Ibuprofen ongoing schedule: 10:30 p.m. (600mg)

October 27, 2004 (Wednesday): 5 a.m. Ledum; then slept till 7, so took Ibuprofen half an hour late. Waited 35 minutes for it to work, then got up to make coffee; could not complete job without going back to bed. Call Whole Life Clinic: say I got mail from them that was sent to my old address, I say that my new address is on the letters I sent them; I ask how much longer I should be taking/needing Ibuprofen, they say they talked to Alan Graham and to ask him… I’m shocked. I say they had my address wrong, they prescribed penicillin when I’m allergic to it; and that they said I had appendicitis when I had my appendix out as a child. Janis says to call Alan Graham and hangs up. I call her back and tell her that discussing my medical situation with him, without a release, is illegal.

October 28, 2004 (Thursday): Out of Ledum… Call Kerry campaign and say that I will donate $25 if someone can pick it up and bring me Ledum from Vitamin Cottage at the same time. Also out of B12 needles, but that seems to complicated to try to deal with at the same time, i.e. in one errand for the $25 donation. Muscles seem more tight, but I’m also very worried and stressed so maybe that is why neck feels so much tighter, and mouth.

October 29, 2004 (Friday): Muscles very tight. Hard to be up for even the shortest amount of time. Muscles so tight they cause me to bend over when I’m up. Feel like I need to get more B12 needles. Kerry campaign sounds doubtful when I mention B12 needles for a donation… so I call Home Instead and agree to pay for three hours so I can have someone get me some more B12 needles. I relax a lot after I have the needles and a B12 shot. By midnight muscles seem a bit less tight.

October 30, 2004 (Saturday): Muscles a little less tight; able to sit in chair and soak foot in Epsom salts for 20 minutes, a few times — have hour rest in between. Red line seems a lot less bright. B12 shot; also still taking Ledum. By 7p.m. muscles feel less tight and I’m so happy about that. I can bend enough to turn the electric heater on, though doing so feels as if I’m pushing the envelope.

October 31, 2004 (Sunday): Woken by intense, extreme pain in right thigh. Feels like a million blood vessels broke; but when pain subsides, I turn on light: my thigh doesn’t look different; muscles in it feel lumpy. Maybe the pain is from them tightening like my stomach, side and back muscles tighten, only because my thigh is so often numb, maybe the pain shocks through the numbness or something… Now when I touch it, the muscles are sore like my stomach muscles were sore after they’d been tight.

Maybe the extreme pain in my thigh is the muscles contracting, only it feels different from my back muscles contracting because of my thigh being numb (peripheral neuropathy). Certainly the pain is extreme and makes me scream like the muscle contractions in my back did. I haven’t touched my stomach muscles in ages because I’m afraid I’ll bring on those horrible muscle contractions in my back. My hospital records show tests for all kinds of illegal drugs, but no B12 or folate test.

Maybe when Dr. Raboff said my blood work looked good, all he meant was that I hadn’t been taking illegal drugs; that’s worrying if he thought the problem was illegal drugs and didn’t look at the real problems, like my tight muscles and the contractions in my back. I think I better go there today, because if the extreme pain in my thigh is related to tetanus, then maybe I still haven’t had enough antibiotic: Dr. Raboff prescribed a small amount, then it took several days to get more, and then that amount was only a quarter of what tetanus web sites recommend. Luckily I was able to get twice that amount… so in the end on the second course I had about half of what is recommended.

The trouble with going to the hospital is that I’ll have to call an ambulance since not only haven’t I been up but a few minutes a day, if the intense pain happened while I was driving, it could cause an accident. Another problem is that if the hospital is invested in being right, then they will not look at my symptoms this time either, and they won’t actually do what is needed to help… I will take this “journal” with me, and the actual needle on the paper I taped it to.

Also worrying: the hospital apparently decided I was paranoid… and again, just like May, 1997, focused on me being psychologically rather than physically sick. I think that on October 7, 2004, my hospital created history, my TBI (traumatic brain injury) and how extremely irritable I was worked against me. The pain was so severe that it depleted me. I was angry that I am in poverty; I am sure I could still be a Realtor if the hospital had identified my B12 problem in May, 1997, and had treated it. I already knew at that time that my mother had pernicious anemia; I just didn’t know that pernicious anemia can be hereditary. So, my anger at the hospital’s negligence regarding my B12 in 1997, caused me to be angry and fearful that the same thing would happen again… and it did. Today, this “journal” can speak rationally about what has been going on physically with me: muscle tightness that reduces after antibiotics, but which returns when the small courses of antibiotics run out. I’ll put my prescription bottles in my purse now.